Using Smart Technology and the Cloud to Make Telehealth Accessible for People with Intellectual and Developmental

Disabilities

David O’Hara, Ph.D Westchester Institute for Human Development
May 22nd , 2013
Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Emerging Cognitive Support Technologies: A Key to Promoting Community Participation and Health for Individuals with Intellectual and Developmental Disabilities

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Cognitive Support Technologies … Technologies for Individuals with Cognitive Disabilities

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Technology Defined

the application of scientific advances to benefit humanity
(The Franklin Institute - http://fi.edu.franklin.glossary.html)

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Technology Paradox Technology Paradox
Functionality vs. Usability

F u n Hi c ti o n a li t y Low

“…the same technology simplifies life by providing more functionality … “…the same technology that that simplifies life by providing more functionality … also complicates by making it hard to learn. complicates life by also making it hard to life learn. This paradox of technology is often used by people as an excuse for poor design…” Donald A. Norman - The Design of Everyday Things, Institute 1988 (pp. 30-31) Westchester for Human Development
University Things, Center for Excellence in Developmental Disabilities Donald A. Norman - The Design of Everyday 1988 (pp. 30-31)

Functionality
Low

Usability

Usability

Hi

Example: Microwave Ovens

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Tele-Health: Existing and Emerging Technology Platforms

The User Interface is the Key (Software)

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Cognitively Accessible Windows or Macintosh Computing Environment
Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Desktops are Driven by Personal Interests and Needs

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Accessibility Settings Applied to Each User via the Cloud

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Type 2 Diabetes and People with I/DD
• Data from 2006 Medical Expenditures Panel Survey
o Health status of working age adults with cognitive limitations compared with adults with no disability Adults with I/DD significantly higher prevalence 19.4% vs 3.8% o Also significantly higher prevalence 6 other chronic health conditions

o Adults with I/DD and diabetes significantly more likely to have 4 or more chronic illnesses
Reichard & Stolzle (June, 2011). Diabetes among adults with cognitive limitations compared to individuals with no cognitive disabilities. Intellectual and Developmental Disabilities 49 (3), p 141-154.
Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

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The Wagner Chronic Care Model

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Health Literacy
• Institute of Medicine workshop reports:
o Promoting health literacy to encourage prevention and wellness (November 1, 2011)

Research to find better pathways to improved health literacy and better health

o Innovations in health literacy (March 10, 2011)

Health literacy and health disparities, better use of IT improve health literacy

o Overall nearly nine out of 10 adults have difficulty using health information to make proper health decisions

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

14

Premature Deaths of People with Learning Disabilities
• Data from a study between 2010 and 2012 in the UK o Looked at the causes of death among all known deaths among people with learning disabilities in the Bristol area of south-west England
o Men with learning disabilities died, on average, 13 years sooner than the general population o Women with learning disabilities died, on average 20 years sooner than the general population o Overall, 22% of the people with learning disabilities were under 50 at the time of death compared with just 9% of the general population o “The cause of their premature deaths appears to be because the NHS is not being provided equitably to everyone based on need. People with learning disabilities are struggling to have their illnesses investigated, diagnosed and treated to the same extent as other people.”
Heslop, et al, (March 19, 2013). Confidential inquiry into the premature deaths of people with learning disabilities. Norah Fry Research Center, Bristol University, England. http://www.bris.ac.uk/cipold/fullfinalreport.pdf

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

15

Health Care Transition for Youth with Special Health Care Needs: A Review

3,370 articles considered – all had recommendations on what to do

• 15 had data on post-transition outcomes
• Implications and Contribution: “Although many youth with mild special health care needs transition successfully to adulthood, those with more complex medical conditions experience less educational and employment success. Youth with cognitive or mental health impairments have poorer transition experiences. Few programs demonstrated evidence of success in improving youth’s transition outcomes…. We recommend additional studies with strong research designs to guide best practice in preparing YSHCN for adulthood.
Bloom, et al. (2012). Health care transition for youth with special health care needs. Journal of Adolescent Health 51, 213-219.
Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

16

Westchester Institute for Human Development

HealthCare Manager – Personalized Health Plan on iPad

University Center for Excellence in Developmental Disabilities

Cognitively Accessible Telehealth Portal - iPad/Android

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Windows tablet individual dashboard

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Cognitively Accessible Telehealth Portal – Desktop/Touchsmart

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Facebook: Powerful Opportunity to Connect
Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Endeavor Connect: Cognitive Access to Facebook
University Center for Excellence in Developmental Disabilities

Westchester Institute for Human Development

Improving Oral Health

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Janice after you eat every meal you need to go brush your teeth and you need to get your brush and your toothpaste and go to the bathroom

Self-Directed Consumer Surveys
Self-directed, survey tools , such as consumer satisfaction surveys, using multi-modal presentation and accessible design can increase independence and reduce staff time interviewing and entering/ aggregating data.

Westchester Institute for Human Development

ATLAS – Accessible Testing Learning & Assessment System

University Center for Excellence in Developmental Disabilities

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Health Quest
An accessible survey tools to enable individuals with cognitive disabilities to become active participants in their own health and wellness.

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Access to Cloud-Based Data

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Survey Response Summary

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Survey Response Detail

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Individual Responses

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

Future Projects
• Design and implement an alternative patient-centered medical home experience survey directly accessible for people with cognitive and other disabilities • Develop and deploy accessible health education, health promotion and wellness resources through currently available EMR’s • Use smart technologies to support transitions for young adults with I/DD from pediatric to adult health care

Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities

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